At first it was black swans taking up residence in the newly created wetland a couple of hundred metres from where I live. A couple of years ago a pair of white swans arrived with a brood of almost grown cygnets, which have since departed. The adult pair reappeared, but I can’t say for sure whether it is the same pair as before. They have been keeping a low profile lately and I was beginning to wonder whether they had moved away, again so what a thrill it was to see they have merely shifted to a different pond and produced five cygnets. That’s seven swans a-swimming at Christmas, but they are camera-shy and you’ll have to look hard to see the cygnets in this photo.
For the last few weeks I’ve been working with two groups of older people, sharing poetry and creating new poems.
I just love the way poetry triggers thoughts and associations and gives people a voice and allows them to speak about what is meaningful to them, whether it’s about something that happened yesterday or sixty or seventy years ago. There are no right or wrong answers, no pressure to remember specific things, and imagination is as important as memory.
Some lovely poems come out of this process. Here’s one of my favourites. It came out of the first session with a group run by Presbyterian Support’s Enliven service. We started with poems about dogs and after reading the poems we started talking about pets. Everyone wanted to talk about cats, so we went with that. The poem captures the participants’ unique way of seeing and the importance of their pets. They were delighted with seeing the poem created from their own words.
A dog would die for you, but a cat
just sticks its tail in the air
and walks away.
They seem to know things
and appear when they hear
noises from the kitchen.
They regard humans as poor providers;
that’s why they bring in rats and mice.
A cat chooses you. Ours came from a paddock
at the end of Woodville Street.
It has a long tail with different coloured circles –
grey and red and brown.
Our neighbours brought us chocolates
because the rats have gone since the cat arrived.
You do go for looks with cats.
Ours is ginger. Very pretty.
Cats purr like traction engines.
They like to be patted; they’re very relaxing
and calm you. You pick them up
and they snuggle up and gaze at you.
I dunno—I just love them.
The Rosie Project, by Graeme Simsion, is a delightful romp with the endearingly quirky fictional professor of genetics, Don Tillman. At the age of 39 and never having been on a second date, Don sets out with a 16-page questionnaire to find the perfect wife. Perfect for him, that is. He is blissfully unaware that his criteria eliminate just about every woman he’s ever likely to meet.
Although it is never stated that Don has Asperger’s, he quite clearly has. He may have little insight into the thoughts and feelings of others, let alone the minefield of social interaction, but he is acutely aware that his brain is wired differently.
The lack of a label works brilliantly by keeping the focus on Don who comes across as a real character, not a list of odd behaviours. For me, The Rosie Project isn’t about someone with Asperger’s; rather, it is about acceptance and is the story of someone who doesn’t quite fit in and his search for a relationship.
I had the pleasure of hearing Graeme Simision talk about The Rosie Project in Wellington last month. He said that he didn’t research Asperger’s and didn’t set out to invent an ‘Asperger’s’ character. This got me thinking about dementia and how people with dementia are portrayed in fiction and it seemed to me that concentrating on the character, rather than the condition, as Simsion did with Asperger’s, is the way to go.
Graeme Simsion is such an engaging speaker and his reading from the book was so entertaining that I immediately rushed off to buy the book. To my surprise, The Rosie Project has a minor character with Alzheimer’s. Daphne is an elderly neighbour of Don’s and her life revolves around visiting her husband who is in a nursing home with Alzheimer’s. Don befriends Daphne and tells her a great deal about genetics as he accompanies her when she visits her husband in his nursing home. After her husband dies, Daphne develops Alzheimer’s and Don visits her regularly when she in turn goes into the nursing home. He continues his visits long after she no longer recognises him. He may be awkward and perplexed by the nuances of social interaction, but he accepts Daphne and is a friend to her when no one else is.
The Daphne story is incidental to the book and I’ve never seen a reviewer comment on it, but I think it’s a lovely complement to Don Tillman’s story.
It’s great news that people are reading my book. How do I know this? Partly because I keep a close watch on which libraries hold the book. I also look at whether any copies are on issue, and have been delighted to see that lots are on issue throughout the country. So, word must be getting out there.
I see the book on the shelves when I go into a bookshop, but what I don’t know is how many people are actually buying it.
Another way I know that my book is being read is from feedback from people who have bought it.
I’ve discovered that someone will buy the book and then hand it on to another person, or sometimes two or three other people. Great! One of the reasons I opted for a print book, rather than an ebook, was that I thought readers might well want to lend their book to other people or pass it on. So, it seems I was right on that score.
When I wrote the book I had a lot of things I wanted to say about dementia and it was very, very important to me to get the book into readers’ hands. But there is a little sting in the tail—I have discovered that readership does not equal sales.
Although sales are ticking along nicely, it’s just as well I don’t define success purely in terms of sales.
Last week I had the pleasure of speaking to a lovely, receptive audience at a Grey Power meeting. I started by talking about why I wrote What Are You Doing Here? Reflections on Dementia, but spent most of the time discussing why it’s important to talk about dementia and why personal stories are so important.
There are plenty of very good caregiving handbooks or guides around, and they are invaluable for people in the middle of day-to-day coping and caring. But I wanted to reach a wider audience of people who probably know someone with dementia or a caregiver, but don’t necessarily have those daily caregiving demands themselves. When I first started writing, people told me that they weren’t so interested in caring tips—they wanted to read personal stories.
Here are just a few of the things that make personal stories powerful and engaging:
- People connect with stories
- Stories are a way of sharing experience and can illuminate a subject in a way not otherwise possible
- It’s reassuring and validating to read of others with similar experiences
- Stories ‘fill in the gaps’ and can reveal what not obvious to outsiders
- Stories come from the heart and touch our hearts
Stories invite other stories. One person tells their story and another adds theirs. When I invited questions at the end of my presentation, one woman stood and told a little of how she and her husband coped with dementia. I had spoken about the importance of concentrating on what a person can still do, rather than what they can’t. The woman illustrated this point beautifully by telling us how her husband was still able to add figures and she would give him lists of figures, which kept him happily occupied doing something that he could do well.
Obviously this was just a glimpse of a much larger story, but it was important for many reasons. I’m sure, for example, it’s a revelation for many that a person with dementia is often capable of intellectually demanding tasks.
It’s so rewarding when people connect with stories and a talk becomes a conversation.
How exciting! A five-star review of What Are You Doing Here? Reflections on Dementia on Goodreads.
I wanted to add a widget to this blog showing Goodreads reviews, but I can’t seem to do it on a WordPress blog.
Instead, I’ll quote the final paragraph of the review here:
‘I can’t help but feel the world would be a better place if ‘What Are You Doing Here?’ was recommended reading for anybody either working with dementia sufferers or responsible for making policies that affect their lives.’
Of course, I agree! There is a lot in the book about my mother’s experiences in residential care and in hospital—some of it good, some of it not. I discovered how easily people with dementia can fall through the cracks. They get overlooked, and sometimes ignored. Assumptions are made, reactions to confusion and stress are labelled as challenging behaviour and no one has the time to listen and reassure. There are some amazing people who work in dementia care and treat the people they care for as people, but we need more of them. And we need policymakers who realise there are people behind the statistics.
In my last post, I commented that the workload and learning curve don’t slacken off once a book is launched. This post looks back at just what was involved in getting as far as the launch. Back in January this year when I decided to go ahead and self-publish, I happened to see a post on author Catherine Ryan Howard’s blog where she listed all the steps in self-publishing one of her books as an e-book and a POD paperback. I love making lists, so I immediately started my own, but mine is for a traditionally printed book.
Here’s my list:
- Make a rough estimate of unit costs for digital printing using the online calculator of a local digital printing digital firm
- Request estimates from other printers
- Request estimates from book designers (for cover and interior design and layout)
- Crunch numbers
- Visit a printer to discuss requirements and request a quote
- Receive quote from printer and re do numbers
- Start working on blurb (harder to write than the entire book)
- Arrange editing (editor can’t start until following month)
- Begin work on marketing materials
- Send draft manuscript to editor
- Receive edited manuscript
- Work through changes one by one (very time consuming)
- Response to editor’s changes
- Receive final version from editor
- Check to make sure no errors in edits
- Meeting with printer
- Meeting to brief the designer
- Apply for an ISBN
- Meetings with designer to review design suggestions for cover and interior
- Interior to designer
- Start work on website
- Arrange head and shoulders photo for back cover, website etc
- Receive PDF printout from designer and proof read it
- Apply for Cataloguing in Publication record
- Two more rounds of proof-reading
- Negotiations about design cost overruns that I wasn’t informed of until the work was completed; re-do figures and feel slightly ill
- Check final proofs before printing
- Prepare fact sheet about the book
- List book with Nielsens (best thing I did!)
- Start arranging talks and preparing presentations in anticipation
- Contact a small number of magazines, websites and organisations offering review copies (and defer sending review copies to bigger publications until I’m generating some sales)
- Arrange interview on local community radio
- More work on website and blog
- Send out launch invitations
- Pick up boxes of printed books from the printer
- Send two copies to National Library for legal deposit
- Receive and process first orders (invoicing, packaging, repeated trips to the Post Office)
- Record radio interview
- Arrange a distributor
This is just a summary; it doesn’t take into account how long it took to complete some of the tasks or the hours of figuring out how to do some of them. And it doesn’t even hint at the previous two years of research and writing. The best thing about this list, for me, is I can use it as a starting point if I ever embark on another self-publishing adventure, although I probably wouldn’t do it quite the same way again.
Even though I stopped my list at item #40, the work is never-ending. Sure, having a distributor lessens the workload, but I’m still busy marketing and hardly a day goes past without me doing something related to getting word out about the book. Yesterday it was a presentation and today it’s a blog post.
I love going to book launches. I’ve been to a few over the last few years—mostly local authors—but on Sunday it was my turn when I launched What Are You Doing Here? Reflections on Dementia. As a self-published author, this was very much a do-it-yourself affair—a morning of making sandwiches and savouries and chilling the wine, followed by a relaxed gathering on a perfect spring day.
One of the nicest things about the day was that some of the people I interviewed for the book were able to attend. They have all been involved in caring for people with dementia, and were unstinting in their time and willingness to talk to me when I was researching the book. It was a pleasure to see them again, especially as September is World Alzheimer’s Month and the theme is ‘A Journey of Care’.
I made a healthy number of sales and was delighted when the next day I made almost as many sales again. It’s starting to feel as if I’m gaining a bit of momentum.
Earlier this year I made a decision that has taken over my time and energy. I wake up thinking about it. I work on it most days, and I go to sleep thinking about it. ‘It’ is my decision to self-publish.
My book is about dementia. It follows my mother’s experience of dementia, but it’s more than a memoir. It draws on other people’s stories, and is as much about dementia as my mother or our family. I’ve tried to understand and explore the experience of dementia, as far as that is possible.
I did try to get the book published and received a lot of very positive and encouraging feedback, especially about the writing. In the end it wasn’t commercial enough for a traditional publisher. However, I realised that ‘no’ from a publisher does not necessarily mean the book is no good. A publisher will only take on a book that they are sure will be a commercial success, and that’s not easy in a very small market like New Zealand. A self-publisher, however, might be able to afford more modest aims and a more hands-on, personal approach to marketing. I decided to back myself by self-publishing. Let’s see whether it was a good decision.